PMR, PREDNISONE, SPOUSES
Posted , 12 users are following.
I am one year i to PMR. I dont know how my husband can deal with this. Sometimes it is not too bad...but other times my fatigue, pain and rotten disposition are uncontrollable. Cant imagine going forward for another year or more. Friends and family members are not asked to endure each new day and the repercussions of the pain and the meds....not like my husband is. I know I do nt even have a clear picture of my attitude and personality anymore. Any advice?
4 likes, 11 replies
julian. kathy67492
Posted
I'm down to 6mg/day pred and manageable. 10mg was difficult. Not having a clear picture of myself was like being detached, no reference point, floating. Not me. I also lacked concentration and short term memory terrible. Plus "pred brain" or "brain fog" limited complex problem solving.
It really isn't nice. But I took some solace from "at least I know something is happening to me". It meant I could do something about it. Imagine the effect on relationships for those who don't really recognise its happening.
I really only did three things.
One was talk about it with wife and daughter. Makes it easier to simply say "I feel like an unexploded ...." or "I'm getting overloaded ..." or "I need to stop.." and have them understand and accept. They are sensitive enough to not tell me how bad my behaviour was, and I didn't really want to know the details. I also talk freely about it with people I'm working with, and my neighbour. It makes a bit of space for me. Also discuss the second bit.
The second bit was learn to simply walk away when I was losing control. No time for explanation. Just walk away. Don't let it escalate. People understood the couple of times I've simply walked out of meetings I return when my disposition has improved.
Third was stress reduction. Don't do the things that aren't really necessary. Have others do things where possible. Organise life differently. Pace myself. Stop before it all goes belly up. I have more self control when not tired. If contemplating something stressful then back to talking about what may go wrong - then when it does go wrong laugh about it - "we knew this would happen ..." sort of humour.
All easier said than done (just talking about it was hard enough).
I wish you well.
erika59785 kathy67492
Posted
My friends know about the illness and t r y to understand that prednisone can only take away 70 % of the pain. I will be on 20 mg for a month and reduce by 1 mg a month after that. I have hamster cheeks, and don't walk well.
Emotions are much stronger with prednisone........I got upset at my sister when she called..... she told me that my "moon face" is due to eating too much which is not true. Pfrednisone tends to distribute fat differently. She told me this about 3 times before, and I could not take it anymore because I told her that this is due to the prednisone. She obviously does not want to listen .
If possible, let your husband read some of the responses you will get. This is a great and caring website with fellow sufferers. Take good care of yourself which is important, and get as much rest as possible. All the best, Erika
hilary_76724 kathy67492
Posted
cindy63197 hilary_76724
Posted
tina-uk_cwall kathy67492
Posted
i'm very lucky my husband is very good and most of my friends are. Pre diagnosis when I was in so much pain and I was so stiff I was a completely different person but as the pain gets more under control and the preds reduce you do see sparks of your former self returning. For me what is important is acceptance. It took well over a year post diagnosis to accept that I had this condition and that it and all the rest of its baggage was going to be with me for the long haul. I stopped waking up, going to bed, living each hour of the day scared and anxious, worrying about what the next day's new twinge or twang could be. Now I enjoy my life once again, obviously not quite like I used to as I still am unable to do many things, but I really enjoy my life again and thank god and the advancement in medical science that I am still alive and kicking! All the best, christina
linda17563 kathy67492
Posted
erika59785 linda17563
Posted
Everyday I feel a tiny bit better, and I hope to see the light at the end of the tunnel......
EileenH erika59785
Posted
erika59785 EileenH
Posted
charlie44644 kathy67492
Posted
All you have to do is have your mate or friends follow the discussions on this site for a day or two. The comments should give them some insight into how tired, uncomfortable/ painful and frustrated the sufferers of PMR are. It is not an enjoyable process. Give your hubby a hug, Let him know you appreciate him.
Charlie 44644
EileenH kathy67492
Posted
The northeast of England PMRGCAUK support group made a DVD a few years ago to explain to patients and their family and friends how PMR affects us - there are patients, doctors and physios on it explaining the implications of PMR and pred.
It is a certain fact you find who your real friends are!